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#motor neurone disease
bpod-bpod · 2 months
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Neurotoxic Relationship
Lab-grown neural network model bearing dysregulated TDP-43 protein – a feature of neurons in certain neurodegenerative diseases – reveals accumulated NPTX2 protein, that is confirmed in the brains of patients with amyotrophic lateral sclerosis and frontotemporal lobar degeneration. NPTX2 could thus represent a novel therapeutic target
Read the published research article here
Image from work by Marian Hruska-Plochan and colleagues
Department of Quantitative Biomedicine, University of Zurich, Zurich, Switzerland
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Nature, February 2024
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bespokeredmayne · 4 months
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How to make Eddie’s birthday a happy one
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Fans’ annual fund drive for Eddie Redmayne’s Jan. 6 birthday, is on! It’s your annual chance to support Eddie +a cause dear to him for more than a decade now, since his Oscar-winning portrayal of Stephen Hawking in The Theory of Everything.
Even if you can’t donate, please share our posts to help create awareness of this deserving organization + those affected by this devastating disease. The JustGiving link +QR code are in the graphic + below.
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tattoos4mnd · 1 month
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June flowers for my Mum
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tuptastic · 3 days
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Disability, especially with a rare condition, is so difficult in so many small ways.
It's the stares you get when you walk around and they see your gait, unusual and unstable and a clear sign something is wrong.
It's being ignored in favor of your companions because the person in a wheelchair obviously can't speak for themselves, right?
It's being followed in stores because of your service animal, and being photographed and touched without your consent and having medical episodes expanded on because strangers approach you when you're down to ask questions and refuse to allow her to work.
It's having to plan trips carefully because you know there are areas you can't access and things you can't do anymore, and seeing your friends faces flicker with emotions you can't describe even though they try so hard for you.
It's having to work twice as hard as your classmates to achieve the same results, because you physically can't handle the same effort they put in.
It's seeing the shocked looks when you remind people that accessibility is done to the bare minimum, and that there are places I can't access because it's deemed a financial burden to change.
It's knowing the look on a doctors face when they have once again found no answers, and when you're going home again with nothing despite everyone telling you something is wrong. And that's at best - at worst, you go through another period of mistreatment and neglect, or you end up back on a treatment that almost kills you.
It's never having a community because there is no one else out there like you. You can get close, but you will never find your people.
It's painful. It's terrifying. And it's so hard.
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larchwood · 11 months
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Aussie Hollywood royalty ‘steals the show’ at Fight MND Big Freeze slide
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scotianostra · 1 year
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Very sad news  tonight, Scotland Rugby star and all round good guy Doddie Weir has passed away after a six year fight with Motor neurone disease.  Rest in Peace Big Man.
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my-brodie999-fan · 3 months
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rugbypodbg · 2 years
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Ед Слейтър: Глостър ми помогна да се измъкна от "тъмното кътче" след диагностицирането ми с моторно невронно заболяване
Ед Слейтър: Глостър ми помогна да се измъкна от "тъмното кътче" след диагностицирането ми с моторно невронно заболяване #ръгби
34-годишният Слейтър, който наскоро беше диагностициран, завърши 350-километровото колоездене, което завърши на стадиона на Глостър ” Kingsholm Не им беше лесно да се справят с тази променяща живота им новина, но те бяха страхотни Ед Слейтър похвали Глостър за това, че са го измъкнали от тъмното кътче, след като е бил диагностициран с болестта на моторно двигателния неврон. Бившият играч на…
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globalstemcellcare · 2 years
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#motorneurondisease #stemcell #globalstemcellcare
All About Motor Neuron Disease
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More than ever...Thank you! > New video of Eddie for MND Association thanking all the support in 2023 💙
🎥 Full video MNDA on YouTube
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bpod-bpod · 3 months
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Problems with Excitability
Details of the structure and functional changes that underlie neurons' impaired excitability characteristic of the neurodegenerative disease amyotrophic lateral sclerosis (motor neuron disease)
Read the published research article here
Image from work by Peter Harley and colleagues
Centre for Developmental Neurobiology, Kings College London, London, UK
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Cell Reports, November 2023
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alswarriorsa · 10 months
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Out of Control
I’m spiralling. It feels like I’m free falling without a parachute, about to collide with Mother Earth with a zero chance of survival, and in a way, that’s what MND is.
It robs you of your independence, it robs you of your dignity and eventually it takes your life.
I find myself feeling so angry, sad and frustrated all at once. I can’t express myself properly, I hate the impact this has on me and also the people around me.
I realise that I need therapy, and soon. I’m not coping with this at all, and perhaps it’s just that I’m processing what this all means for my immediate future.
It’s so hard to stay positive when the debt calls keep coming and the universe never lets up. When your family aren’t prepared to help. When people you know that can afford to help, just scroll past your pleas for assistance.
And I know I’m both right and wrong on many of these things, but my emotions are a mess and I can’t adequately deal with anything at the moment.
I want to be held and reassured, but that one thing I want I’m not getting because I’m lashing out.
Today I’ve been jealous of a kitten. Because I too want to be held and adored, but my reality is undignified loo visits, mobility assistance, work and work admin - not the light and fluffy stuff.
Who would adore an angry person who’s a pain in the ass? Pass the kitten.
My conversations don’t get to be fun. They are always about what needs to be done or happen next. What PMBs cover, or don’t, the wheelchair quotes and the next invoice.
And in the middle of all this I free fall.
Finding joy would be great, but I don’t know where to start. It’s practically evading me.
I want to feel like a normal person, for just one day, where I’m me, and not the disabled patient.
I just want my life back.
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tattoos4mnd · 2 months
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Flower ideas for my sister
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brahmhomeo · 1 year
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Guillain Barre syndrome treatment
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Unraveling Hope: Stem Cell Therapy for Motor Neuron Disease (MND)
Discover Hope Unraveled! 🌟 Explore Stem Cell Therapy for Motor Neuron Disease (MND). Breakthrough Solutions for Improved Mobility and Quality of Life Await.
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scotianostra · 2 years
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Happy Birthday to ex Scottish Rugby Player Doddie Weir..
Born George Wilson Weir on this day 1970  in Edinburgh, Doddie was educated at Daniel Stewart’s and Melville College  and given the school’s heritage with the sport, and Doddie’s size, it was only natural he would take up the rugby.
After his education finished he played for Stewart’s Melville FP, the FP  stands for former pupil, he then went on to play for Melrose in the Scottish Borders, and was part of the team that won six Scottish club championships.
He later moved to England in 1995 to join the Newcastle Falcons, helping them win the Premiership in 1998.
Lock Weir was capped 61 times by Scotland, and was part of the victorious Lions tour to South Africa in 1997.
He moved back to Scotland to join the newly reformed Borders team in 2002 where he remained until his retirement from professional rugby. He finished his playing career together with Gary Armstrong at Borders Reivers in 2004.
In 2016 Doddie was diagnosed with Motor Neurone Disease (MND) in 2016 and made his diagnosis public the following summer.  Although the average life expectancy is between one and three years, he has defied the odds to keep battling and his charity, the My Name'5 Doddie Foundation, has raised more than £4million for research into a cure. Doddie was also told that a year later he would not be able to walk, he is still walking to this day, a testament to the determination and fighting spirit of this remarkable man.
And while it put a stop to Doddie’s usually hectic schedule of appearances and dinners, the 61-times capped Scotland internationalist has enjoyed spending time at home with his family.
A big favourite with the Murrayfield crowd, the 6ft 6in lock was famously described by the late ommentator Bill McLaren as as being “on the charge like a mad giraffe”.
In 2018 The Doddie Weir Cup was inaugurated, a perputual Rugby Union trophy to be played between Scotland and Wales, the first match in Cardiff in November that year was won by Wales, as was the second match, of course this years match has not been played due to the pandemic.
Speaking on the most recent My Name’5 Doddie Foundation Dodcast, hosted by foundation CEO Jill Douglas, Doddie said: “This lockdown I’ve quite enjoyed because it’s allowed me to spend time with the family.
“It’s been quite good to re-charge the batteries. There’s no doubt about it, I’m fighting MND a bit more than I was a year ago. We’re fighting it hard, but the farm has been unbelievable. It’s allowed me to get out for a bit of fresh air, with friends and family, and we’ve got an outside gym that I use once or twice a week.“I still think I’m doing quite well – I’m still getting up and down the stairs unaided and enjoying a wee bit drink at night.”
Doddie explained “As a bloke you just think ‘I’m fine’, but with this that’s not quite the case. Basically it’s a muscle wasting disease and that’s how in the later life of MND it’s horrific because you need help everywhere.
"Basically your muscles in your legs disappear so you can’t walk; you can’t really eat, and then your muscles within your speech disappear so you can’t speak; you can’t swallow and can’t breath so it’s horrific what happens.
”….“But it’s such a debilitating condition and there’s nothing out there that can help any patient with MND.
He has signed a “Do not resuscitate” (DNR)  over two years ago.
In February 2020 Doddie said his decision to refuse potentially lifesaving CPR came after a tough chat with his sons Hamish, 18, Angus, 17, and Ben, 15. "I’ve had to talk to them about DNR. We’ve just signed a document for that at the moment, which isn’t easy.”
He added: “You just have to be honest and open and they took it really well.”
The remarkable Doddie Weir continues to fight his affliction, more than 50 people joined him in the event last Tuesday to raise funds to support research into the causes of MND.  The occasion was to celebrate Mr Weir’s annual My Name’5 Doddie Foundation (MNDF) Scotland Golf Day and earned the charity a five figure sum.
Doddie currently lives with his family on a farm which he bought in the Scottish Borders
  You can read more about and donate to Doddie’s charity foundation here https://www.myname5doddie.co.uk/about
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